Pathfinders Neuromuscular Alliance is a user-led charity (reg. no. 1155884) which promotes choice and control and quality of life for teenagers and adults with Muscular Dystrophy and related conditions in the UK. It campaigns for improved standards of health and social care and provides advice, guidance and support to teenagers and adults with Muscular Dystrophy and related conditions on issues such as independent living, housing, employment and welfare rights.
It’s a shame there’s not a whole lot of subscribers to this channel. And I see some of the garbage that has thousands and thousands of subscribers. I’m sorry that this channel doesn’t have more. This was very interesting and it makes me realize how blessed I am. Because I feel sorry for myself at times and I should not. I used to say that all the time, life is not fair. I had polio from the vaccination as a baby. I realize how blessed I am that I can walk with the brace and a crutch and a walker. God didn’t do it. I get angry at God once in a while. But it’s not his doing. I don’t think you can get through life without God. There’s no hope otherwise. And I’ve been through a lot. I know the last thing was the death of my husband. Please please ask God yourself he will answer you.
What an amazing carer that man has who is visiting all the other duschane men so genial and loving.i really wish the man who only had his mum as a career and never went out would have gi in a career a chance he seemed so scared my heart broke.
Im a mum that lived and Loved 8 Beautiful years of my Gorgeous Joe's daily struggle with DMD & so many other medical problems .... you are Amazing keep shining Always like Mr Joe still does whenever i do a funraising crazy in his name 💙👣💫
@@clairexxx0405 Aww thanks girl, to us the struggle is real..i can't even afford wheelchairs for us both so i only crawl when i can but my son lost mobility completely. What a challenge! 😢
I lost my brother at 32 when he was my best friend and my rock. He surpassed his life expectancy by 11 years. He was supposed to pass away when he was 16. He lived until he was 32. God bless you.
My son has Mdm it breaks my heart to see him going down fast all becouse of a dr he could have been getting infections treatments over a year ago we live here in lousiana it's sad it's like all I get to do is watch him die he wants to do independed living do they have a indp.living ava for ppl with dmd
So emotional to watch it full... I watched it for 30 minutes and decided I can’t handle more... mother of a Duchenne boy and very scared to know what is going to come and we/my son will have to face all that... All I can say is not everyone is brave enough. You guys and your caregivers have superpowers to take all this and still manage to smile... I salute
An interesting snapshot of game accessibility in 2021, listing basic accessibility requirements and what developers should ultimately be aiming for: no unnecessary barriers in game play. Thanks very much for making this video.
Most inspiring movie I'd say, maybe more nowadays than religious or scientific enlighted matters and comments. This should be awarded because it's genuine thus usefull for us all!
Why didn't he tell parents: enjoy your boy NOW, there's nothing wrong with him at the moment, don't think about future, because who knows what it'll bring, maybe cure or at least treatment.
What a beautiful soul you are. Your life is worth everything! Your life is valuable! Please do not be scared and be emboldened by the message you are sharing. I was never ok with this and I wrote to the Government straight away about human rights, I urge everyone else to do this and to please make this go viral!
This will only end if each and everyone of us stand together and become united. It does not appear this will happen 🙁. Sending you best wishes and hope.
If anyone is to be denied medical care the government should start with all those who have ignored advice to stay at home and have instead hosted parties, flocked to beaches and generally been totally selfish. Well fines wont work but my idea will. Everyone should be forced to carry I.D. and if you are not ouside to either buy food, attend a medical apointment, or take excercise with a member of your household then you should be denied all medical treatment! Just for the record I have Crohn's disease and I hate the idea that people who have stayed at home will die because beds and resourcesare are being taken up by selfish morons. Sorry John but I do not have the words to express my sorrow at your predicament.
Thank you Jon. I urge anyone who would like to address the BMA and the government about this topic to add their name to this statement from Disability Rights UK. www.disabilityrightsuk.org/news/2020/april/covid-19-and-rights-disabled-people
Praying for you. Do not be afraid the Lord is with you. I have three children with Duchenne. One my daughter 31 is in critical care from the influenza a. If we lose our compassion and chose who lives who dies....who are we!?
It is appalling that we are now making plans to leave vulnerable people to die. Why are we all accepting this? Initially the guidelines would have meant some children with Downs Syndrome would have been denied treatment! A huge protest was made by parents and supporters and the criteria was changed. We should be treating all people as valuable human beings. I for one, feel ashamed and disgusted.
Its not that your life isn't valuable it is very valuable! It's more about who is more likely to survive, so someone who has been admitted and doesn't normally need help breathing is more likely to survive it, this even includes age so someone may be 60 and have 30 years left but won't get access to a ventilator if someone is younger and fitter. I've been told that I would be less likely to get help due to my health making it less likely that I would survive. Its a horrific situation and no doctor would want to make such a decision, and I seriously hope they get enough equipment, nurses etc to ensure this doesn't happen.
This is terrible, I am also scared and you are absolutely right..... We are all valuable and nobody should be sacrificed, it is an equipment issue... Thank you so much for posting....
Eloquent as ever. When it comes to resources, the government needs to stop paying the wages of furloughed non-playing staff at Premier League clubs like Newcastle and Spurs while their star players earn £100K+ pw sitting at home. Please sign... chng.it/Ccqqs7Mv
Our President assured us that no matter the stage of life we are in we will all be treated the same which is a God send because my beautiful son has DMD also. I have always stocked up on supplies when I could and even now with what I have I am having to really ration what we use and how we use them. I donated what I could to another family even knowing that my own supplies are running low. Its not who we should be as the human race to degrade someone's life. I am terrified every time I go out because I have no other option that I will bring something home to my son. My wife makes french fries for a gas station and they consider her job essential so she has to work which scares us to death. I wish as a whole we would all shut down our countries and declare martial law and allow the national guard care for us for three weeks so we can kick this virus asap and not drag it on for months at a time. I can tell you this, when God calls my boy home I hope he has room for one more cause my broken heart wont be compatible with life.
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